Tuesday, 2 November 2010

with many a winding turn....

I was going to write about today's run, and how it was painful from the very first stride and took sheer bloody-minded determination to get through every step of the 4.25miles .... but I won't.  Instead I'm going to talk about three things that have happened to me today.  The three things all have one thing in common:

1) LB sent me a link to an article he'd seen in the Independent:"This is what MS looks like ":

"Not being gay, I presumed I’d never have a “coming out” experience. How wrong I was. On being diagnosed with relapsing/remitting MS in February, I discovered a coming-out process is included in the package. My symptoms remain mostly invisible to others: pins and needles in the hands, blurred vision, fatigue, muscle weakness and imbalance (I often give a brilliant impression of being drunk when I am not). Prior to being diagnosed the symptoms seemed so negligible, I was convinced I was a raving hypochondriac.

With relapsing/remitting MS, symptoms come and go, so if your disease is slow to progress, with infrequent relapses and low levels of disability, you can remain silent for years, even decades. I have not “come out of the closet” with many people. Until now."

The author goes on to describe how, in spite of affecting some 1 in 1000 people in the UK, multiple sclerosis is a condition that many sufferers choose to keep to themselves, partly because the overwhelming popular conception of the disease is that it is debilitating and leads to death.  This situation is, of course, self-perpetuating: until there are more people who are prepared to stand up and tell people that they suffer from MS and challenge people's preconceptions of what the condition is, then the longer those preconceptions will linger.  How many famous people can you name who had MS? Richard Pryor? Jacqueline du Pré? Um... President Bartlett on the West Wing?  Well, most people think Pryor died of MS (you don't really die of MS), du Pré had an extremely rare and aggressive form of the disease, and Bartlett's non-disclosure of his MS became a major plotpoint, along with his questions around his capability to do the job.  Not great.

My own personal decision has been to be pretty open about my MS, although I was reminded only today, when talking with a colleague about how I drag a leg when I'm running and feeling fatigued, that I don't volunteer the information to everyone (she looked at me like I was Quasimodo or something, and I didn't enlighten her).  It's not a secret, but it's also not something I like to wear like a badge.  One of my most difficult stakeholders at work has started treating me with kid gloves since I returned to work, asking me if I'm okay and not too tired.  Of course, it soon came out that someone told her about my MS, and she was overreacting.  It's only natural, I suppose, and it's borne of good intentions, but it's not really what I want.  I'm fine.  I have MS, but I'm not a cripple, and I certainly don't want people to define me by my condition.

Anyway, interesting article.

2) I got home to find a copy of the book "Everest: Climbing Beyond Our Limits" by Lori Schneider on my doorstep.  Lori was the first person to climb Everest with MS, and she has autographed the book with a picture of a snowcapped mountain and the inscription:

"To Tim - believe in your inner strength and you will move mountains.  Believe in yourself and live your dreams. Lori Schneider."

It was a gift from Jenni.  Lori is from her hometown, as the note that accompanied the book explained:

"This week she was the keynote speaker at an event I attended.  All I could think of was you and how truly amazing I think you are every day. I owe you so much that I'll never begin to be able to repay.  But I did make a donation to Lori's organisation, which will be providing scholarships to a group of individuals with MS who want to climb Kilimanjaro."

I was touched.  I don't deserve friends this good, and I don't think that anything I may have done can be worth something like this.  Amazing.

3) After initially developing symptoms (somewhat ironically) after completing a fundraising walk for the MS Society last spring, my younger brother has just been diagnosed - yesterday - with multiple sclerosis. MS is not strictly a hereditary disease, but apparently there is an increased chance of MS developing in close relatives of affected people. A mother, father, brother, or sister of a person with MS has about a 1 in 100 chance of developing MS (compared with the about a 1 in 1,000 chance in the general population).  The fact that I already have MS probably made the whole process of diagnosis much faster for my brother than it might have been (a small mercy if ever there was one).  I don't know if it's much of a comfort knowing that I've already gone through some of this stuff and might be able to offer some advice and insight, but for what it's worth, it's a bag of crap.  I wouldn't wish MS on anyone, never mind my own brother.

I know how I feel and how my MS affects me, but my thoughts tonight are with him and how he must be feeling.  And with my mum.... she feels as though this is somehow her fault.  Genetically, she's implicated, perhaps... but what are you going to do about that, eh?  I don't regret anything, and neither should she.

It is what it is.


  1. Hello Swissie - sometimes I read things on your blog that definitely get to me in a want-to-say-something way, but I don't really know what to say. This is one.

    I think the best I can do is one of them internet hug thingies. And you can pass it on in a more appropriate manner to your brother and your mum. Your brother does not have the advantage of Jenni as a friend, but he does have you, and I think that is good.

    (Ps I tried to comment on something the other day, when I did ahve something to say, but I am having trouble with the profile and verification set up, so not sure if it came through).

  2. thanks Red - your other comment didn't come through, but I'd love to hear what you have to say on pretty much anything, so please try again!

    (You're damn right about Jenni too!)

  3. ...oh, and as he reads this, you can pass on your best wishes here, I think.

  4. Hello Swissie's brother

    Really sorry to hear your news. That is a lot to take in and deal with. I'm hoping it will help that ST has shown it is possible to go round the world and all that have fun anyway.

    But I'm sure he won't mind me also saying that I imagine you will also have your own thoughts, feelings and reactions to it - now and over time - which may be the same or different or a mixture, and that's as it should be.

    Take it easy while you;re getting your head round it. I dunno, it is a bit presumptious of me saying that, given that you don't know me, but Swissie has got me used to propounding to people I don't entirely know over the years.

    And now YOU get the big internet hug, in an appropriate way of course.

    best wishes

  5. swisslet's little brother4 November 2010 at 17:06

    Hey red - thanks for the positive words of support (and of course the hug!).

    It is quite surprising how much it actually helps knowing swisslet has gone through all this before me - it somehow makes the whole thing less daunting and scary.